Scoping review of memory making in bereavement care for parents after the death of a newborn

Objective: To summarize and synthesize extant literature on memory making in bereavement care for parents who experience the death of a newborn and to identify opportunities for future research. Data Sources: We conducted a systematic search of four health-related databases (MEDLINE Complete, CINAHL Complete, Embase, and PsychINFO)for original research in January 2019. We then conducted a manual search of the reference lists of all included articles and a citation search via Scopus. Study Selection: Selection criteria initially included all original research articles available in English that related to parents’ perceptions of perinatal or neonatal palliative care or bereavement care for parents after the death of a newborn. These criteria were refined as we developed familiarity with the available literature. Our initial screening of article titles and abstracts yielded 287 articles for full-text review. After full-text analysis, we included all 25 qualitative or mixed method research articles that met selection criteria. Data Extraction: We used a spreadsheet modeled on the Joanna Briggs Institute Review Guidelines (2015)for data extraction. Data Synthesis: Available research was focused primarily on parents’ perceptions of care during and after the death of their newborns. Memory making interventions emerged as significant elements of the experiences of bereaved parent. Several researchers examined parents’ perceptions of specific memory making interventions, such as bereavement photography. Contact with the newborn, opportunities for caregiving, bereavement photography, and the collection or creation of mementos emerged as important elements of memory making. Parents also identified a need for guidance about each of these key strategies for memory making. Conclusion: We identified few studies focused entirely on memory making as an intervention in the context of bereavement care for parents. However, memory making emerged as a recurring theme throughout qualitative and mixed method studies on parents’ perceptions of perinatal or neonatal end-of-life care. Further research is required to provide evidence to guide memory making interventions for bereaved parents who experience the death of a newborn.